hope you are all feeling better today. Sounds as if you are all having a rough time.
Gem made my wbc counts low and I only had it monthly after that as I’ve been on near enough continuous chemo since spet 06 so i think my bone marrow is overworked.
from what jakki says about liver mets causing temperatures, i do remember that happening to my niece when she had liver cancer. Just another horible side effect to put up.
I didn’t get on wth taxotere and dreading the weekly taxol looming but hope it will be better than the 3 weekly taxotere.
Will try to keep in touch.
Kate
Hiya Jakki & Kate,
How are you both today?
I feel sooooooo much better. Only thing I have noticed which may sound strange is that my eyes look weird??
When I look in the mirror my eyes look spaced out and like they’re not mine?! Its really strange???
Got my next Gemcitibine infusion on Monday which im not looking forward to…but hey ho…gotta do it haven’t we?!
X X X
Hi Kate
Last month they gave me Taxotere for my new regime…but hay hooo…i reacted badly with it so htey now amended the drugs to Weekly Taxol…so far after my 1st Session ,lots better than Taxotere…I hope you are ok with it too…2nd weekly Taxol scheduled for Tuesday, all being well with my hickman line…
Veeluz
Veeluz - can I ask what form your bad reaction took? Was it an allergic reaction or really bad side effects?
Gerry
Hi Gerry,
I had rashes all over my body that looks like measles…but it wasnt…lasted for about 2 weeks since day 9…I asked onc if it was the Taxotere or the GCSF injection that i had…but she said more likely the Taxotere…I still have the skin rash marks,though now dryied,skin is peeling off due to dryness…i tried to soothe it then with creams but it inflamed so i gave up…now only showers …pure water…no soap
Mind you both Taxotere and GCSF were both new to me…and probably both too strong for my poor body…
Did u have any reaction too?
Veeluz
Gerry
Just to add, whilst at taxotere and GCSF injection,i had bone ache,nose bleed,bedridden for approx 2 days and bruising as side effects.
Under the Weekly Taxol on its own,none ,so fars,of the above side effects apart from numbness or tingling sensation on both arms 3hrs after the chemo session…not bad compared to the Taxotere/GCSF regime…im waiting until the next Taxol(Paclitaxel) session…
Veeluz
Oohh sounds nasty - I am having some real aches and pains (again could be the GCSF) - but nothing like yours! Sounds like your was tough! Just don’t know how far to leave it before saying something - clearly it mine isn’t an allergic reaction but am curious what other people cope with!
Geraldine
Gerry,
If you have GCSF injection and you have bone aches,it might be that…my GCSF was from day 5 to 9 but the bone ache(like bone marrow moving) was on day 7…onc and nurse sort of confirmed that…it is always worth saying something to the onc and nurse during any clinic and sessions…then they can sort you out if they need to.
The onc was concerned that is why she researched if Taxol will be safe for me ,adjust the frequency to weekly injection, adjust the dose fdrip to the slowestt…it took 5 hrs for my first session and i was under strict monitor during the injection…
i suppose the TAXOTERE is a tougher drug and the dose in 1 big bulk doesnt suit me.I had EPI-CMF in Nov 2006 before,for 6months then radiotherapy 25 sessions…so my body has gone through a lot…my immunity is now so sensitive…well,it can only get better.This week,i got hickman infection which delayed my second Taxol session…
Veeluz
It’s interesting the difference between what onc. prescribe - little and often vs full dose… I’m not sure which I prefer - but glad you coping with the current regime!
Geraldine
Gerry,
So far so good.i just need to get rid of this hickman infection…got anitbiotics for 7days…only 3days more to go…hope it sorts it …Having a hickman is bliss when it comes to finding veins,blood test and chemo sessions.Just didnt want this infection…worst to happen,if hickman does not behave…need t take out and put another one on the other side…Iwho would wan tthe hassle again…so hope fo the best!!! I am more alive last week witht the 1st Taxol than the one with Taxotere…a bit more of norml life…rather than feeling sick most times.
Thanks.
Veeluz
Hi Julie & Kate
Julie - how are you?? how’s your eyes? you said you were a bit spaced out… thats how i was feeling the day after my infusion… giddy/fuzzy headed… i’m feeling better now though than a few days ago… still got the taxol aches, but i can drive and go out etc… so i’m not too bad…
kate - hope your ok… so far, i think the taxol is easier then the taxotere (dare i say it) the bone aches are not as horrendous bone aches that i had with Taxotere. Ive got a horrid concrete like mouth which i keep brushing and rinsing in moush wash, and the steriod bloating but i’m still here to moan about it.
let me know how you guys are going on…
Love jak
xxxxx
Hiya Jakki,
Im not feeling too bad thanks. I managed to do the weekly shop by myself today as OH had a hernia op yesterday. Had a couple of scary moments when I felt like I was going to pass out but i think that was due to me feeling hot?! Luckily I stayed upright and got the shopping done still in one piece!! :o)
I have had slight joint pains but nothing to complain about. Ive noticed ive had a lot of nerve twitches in various parts of the body, ie: ribs, chest, tummy, legs…makes me jump when it happens!
My eyes are ok now too. Its weird what effects we get on this stuff innit?!
Got my next Gemcitibine tomorrow…whoo hoo!! Lets see what delights next week brings me!!
Love
Julie X X X
Hi Ya Jools
I hope you go on ok at the hospital today with the Gem. I’m also back there today for my bloods, then they will decide if i am to have a week off or give me my Gem on Tuesday… I am still not feeling 100% so i hope they give me the week off… i just dont fancy it this week. My Toes are a bit numb too.
I get really hot too… my Air con is on permanent in my car… i get the twitches too, it can be right embarrassing as it does make you jump like you say… i find myself looking at others to see if they saw me jump… i am an on MST and oramorph which ive been told can cause the twitching, are you on any pain relief? i couldnt rememeber if you you said you were.
I will keep you posted as to what they are going to do… let me know if you get your Gem.
Talk later hun
Jak
xxxx
Hiya Jak,
How are you doing chuck? Did you manage to get a weeks rest from the dreaded chemo?
Im not feeling too bad at the mo, it was this time last week (2 days after my 1st chemo) that I started feeling unwell so am keeping a close eye on myself. No chemo for me now til 16th July…phew!
I feel like im being spoilt having a weeks break in between!! :o)
My half hour Gem on Monday turned out to be 4 1/2 hours! The pharmacy was sooooooooo behind with getting the drugs ready and sent up in time. It so frustrating all the waiting we have to put up with.
Moan over!!
Hope your ok?..
Jules.
X X
Hi Jules
Glad you are doing ok, i’m not too bad either, i didnt manage to escape chemo yesterday, except didnt get Gem, they gave me my Taxol. So I have had a full cycle now of Tax/Gem except i’m a week behind with treatment (when my platelets crashed). It was also 2 days after the first one for me that i was poorly… so lets hope it stays like this for us both now eh?
I’m also back now on the 15th for my next treatment… feels great that i dont have to go back… i am going to rest and not put myself at risk of picking anything up whilst my bloods drop… ive had far too many hospital stays with neutropenia, i dont fancy anymore…
My chemo unit was also very busy yesterday, they were running 2 hours behind before my treatment even started and my hours bag turned into a 5 hour stay… its a nightmare isnt it… i had the cold cap on so long, when they switched it off they had to let my hair thaw out for ages as it was so frozen and stuck to my head/hair and painful… had chillblains afterwards!
anyway lovie… will let you go and report back to ya in few days to see how you are fairing up… lets hope its kicking cancer butt and doing its job…
Take care
Love
Jak
xxx
Hi Jules
Just wondered how you are after the chemo now?? I am doing ok, ive been drinking lots of water so i think ive flushed a lot of it out this time and thats why i’ve felt so much better. Had the usual aches in my ribs and my back though, dont think i’m going to escape that… the taxanes are renowned for it. Ive been quite tired too… so i expect the bloods are droppping now… time to avoid everyone with germs eh?
I’ve found that my some of my hair does come out if you run your fingers through it so i am trying not to mess with it too much and only wash it when i have to… i just wet it and style it each day as best i can… i really dont want to lose my hair for the 3rd time…i am praying the cold cap works, my face is bloated from the steroids too… i am reducing those gradually though.
I find that the Taxol makes me feel quite shaky, I dont know if you get that?
let me know how your doing… hope your ok…
Love jak
xxxxx
Hiya Jak,
Im glad your feeling ok, I am too.
I think we are both going through this together as I am now shedding my hair too. Seems to have started overnight?
Was ok yesterday, but today its coming out if I run my fingers through my hair. I washed it this morning and noticed more in the bath than normal. I havent got painful hair follicles like I did when I was on chemo last year?..not unless that has still to come?
One big problem im getting is very very itchy legs. Im not sure if its a rash or if the chemo is flaring eczema up (I know it sounds daft that I dont know if its eczema or not but thats cos I hardly ever suffer with it so badly only an odd patch here or there). My legs look terrible. Big red, blotchy, itchy patches up the back of my legs.
Ive been putting some hydracortisone cream on that helps calm it for a little while but it starts again.
I can scratch at my legs until they bleed which cant be good?!
I have been getting shaky and also about 2 days after the chemo I get increased heart rate and it lasts for a few days. Its a horrible horrible feeling.
I hope your having a nice weekend?
I will catch you soon to compare how we are doing.
Take care for now
Julie
X X X X
Hello Jules
Good to hear from you… although you have to stop that scratching!!. you might pick up an infection now your bloods are dropping… Ive been reading some info on cancer backup’s site and it says both Gemzar and Taxol can cause a rash which is itchy. It says that doctors can give you something to relieve this so i’d give your chemo unit a call and get something from them, dont suffer in silence… not sure if hydrocortizone cream is right to put on… hasnt that got steriods in it? Did the hospital give you this?
I havent got the painful hair follicles like i had on Epirubicin/Taxotere, either… my hair is like really fine where it is coming out… almost as if its fried the hair and its broke off. Some of the hairs that have come out of my head are even curly! I still have a good covering of hair (touch wood) so you would never know its coming out… i just hope it stays that way…
This shakyness we both get… its my worst thing…i was beginning to think it was just me with it… its scares me… my whole body shakes, infact it feels like my stomach is trembling inside and then i get wobbly legs that feel like lead weights. My heart races really fast too… that is scary… then i get breathless… vicious circle with this stuff isnt it? Have you had the numb toes and fingers yet? I get those first thing in the morning then when i move around it seems to disperse.
Anyway… have a day off today from the hospital… bliss!!!
you take care and let me know how you get on with your rash…
love Jak
xx
Hi ya Jules
Not heard from you in a few days… hope your ok…
let me know
hope your not struggling with the chemo…
love Jak
xxx
Hiya Jak,
Im here!! Im not feeling too bad to be honest.
My hair had started coming out big time so I shaved it off this morning. I woke up and half my head was still on the pillow!
Can’t be doin with it falling out everytime I moved my head or lean it against something.
Now im left with a crew cut that feels like im pricked by thousands of tiny needles!
Got my next chemo weds next week so still have a few days chemo free to enjoy.
Can I ask a question? Do you suffer with heavy/fuzzy headed feeling?? I do and it seems to be all the time.
Im really worried that its brain mets. Its probably just the chemo but I cant help worrying. I know I should mention it on my next appointment with my onc but im scared to death of knowing…
Anyhow, how are you feeling?
X X X